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Monday, 25 March 2013

I have lots of medical supplies in my bedroom. Most of the supplies are stored in our garden shed, and the majority of the medications that are important enough to be in the house are stored downstairs. Upstairs medical supplies are mostly things that might be needed in an emergency.

Most of the supplies upstairs are stored in the drawers under my bed, neatly organised for easy access. In these drawers, I keep various dressings and splints, monitoring supplies and medications that I might need if I'm stuck in bed.

Next to my bed I have a set of drawers on wheels. This contains things that I use daily, organised so that I can find what I need (I'll take some pictures for another blog post). Each drawer only contains a couple of different things, out of necessity, as I often find myself rifling through these drawers when I'm half asleep, or trying not to wake my husband.

On top of the set of the drawers is a tray. This tray holds a pair of gloves, alcohol gel and alcohol wipes; syringes filled with pain medication and antihistamines, anti-inflammatory gel, scar gel, and my epi-pen. Overnight, this is where I keep my oxygen sats monitor, thermometer and blood glucose monitor (and glucose tablets). There is a torch at the front of the tray so that I can find things in the middle of the night.

Last night I needed my inhaler.

I looked on the tray, and didn't find it. I looked through each of the three drawers beside my bed, then in the drawers underneath my bed. I looked in the coolbag at the end of the bed (medications I take with me if I'm going out).

There were no inhalers in any of these places.

Eventually I gave up and asked my husband to get a new inhaler from one of the downstairs storage boxes.

It wasn't an emergency, and I certainly wasn't anxious that I couldn't find an inhaler (I found my nebuliser straight away, but decided that I would rather use an inhaler).

The significance of this only hit me this morning. I have had very severe asthma for most of my life. I can barely remember a time when I haven't carried an inhaler with me. I have inhalers and nebulised medications in every handbag, along with an epi-pen, steroids and antihistamines. I even keep a hospital bag packed at all times, ready to be grabbed on the way to the hospital (often by a paramedic), which contains lots of asthma medications, as well as a washbag and change of clothes.

But I haven't needed to use the hospital bag for eight months. EIGHT whole months without an emergency hospital admission. I haven't had an admission for asthma since 2011. Those of you who have known me for a while will gasp at this, I'm sure - I spent five months of 2011 in hospital with asthma, and averaged 6-12 asthma-related hospital admissions a year for many years. A year without severe asthma seemed completely unthinkable.

The fact that I didn't have an inhaler close to the bed amazes me. It isn't just that I have been surviving at home with severe asthma - things have been unimaginably well-controlled for longer than I ever could have expected. Of course, I'm still on high doses of maintenance medications, but my lungs are doing what they were made to do!

One of the first things I did this morning was to restock all the places that should have held inhalers (I don't want to jinx myself!), but every unopened inhaler box felt like a celebration!

Saturday, 2 March 2013

If you've read the last couple of blog entries, you'll know that I had surgery at the end of January. It was a planned operation to fuse one of the joints in my left thumb (the metacarpophalangeal joint).

One of the thing that I mentioned beforehand was that I was trying to prepare myself for the pain to be more than I anticipated. Despite the preparation, the pain was still more than I had anticipated, not helped by the fact that I don't respond to local anaesthetic, which was the preferred method of pain relief for my anaesthetist that day.

The surgical cast (an untidy mix of plaster of paris, crepe bandage and lots of tape) was removed after 2 1/2 weeks so the surgeons could check the wound and check x-rays. I asked the plaster technician how long I had out of the cast. The answer? About a minute and a half. He advised that I get my 'kit' ready while he was cutting the cast, and he'd cover for me while I washed my arm!

My kit? The same kit that I use for all plaster changes, regardless of which limb is currently plastered!

I use the cleansing wipes to clean my arm, removing all traces of iodine, chlorhexidine, sticky residue from the dressings, and dried blood. After couple of weeks under wraps, there's plenty of dry skin too, and the chance to rub at some of the itchy parts is blissful! Alcohol wipes are good at removing sticky residue, but are harsh on the skin. There is a time and a place for harsh chemicals and violent scrubbing. In between plaster casts is neither.

Once the arm is clean, use the dry flannel to exfoliate and gently buff away some of that dry skin. I promise this isn't just a cosmetic exercise. The dry skin contributes to the itching, which can be intense. It's hard to explain how all-consuming this itching can be - it wakes me from sleep, and focuses my mind, diverting attention from more important things. I can't concentrate on anything except the need to scratch under the cast!

Incidentally, I don't recommend sticking anything down the cast, but if you really must, make sure you it's CLEAN; don't use anything sharp, anything that will leave telltale marks on your skin (using the point of a pen is not a clever idea), or anything that will remain behind in the cast. Apparently, the plaster technicians regularly retrieve pen lids from casts. Adults, my dears, not children - you'd think they'd know better! Anyway, I would recommend gently using a ruler with a flannel wrapped around it. You can dampen the side of the flannel that's going to be against your skin, or cover it with moisturising cream. If you have a surgical wound, do NOT scratch, however gentle you think you're being. Just don't do it. Likewise, if you have fragile skin, an injury that is very unstable, or any increased infection risk, please resist the urge to scratch. The short-lived relief that you might get is not worth the many potential risks - infection, wound breakdown, skin damage/ulceration, and possible injury to the joint.

So, back to our nice clean arm: give the skin a nice, gentle but thorough scrub with the flannel, spray with toner (the Liz Earle toner that I use is very light, and made mostly with natural ingredients) to moisten the skin, and scrub again with the flannel.

I don't need to tell you to be careful around any wounds, surgical or otherwise. Now is not the time to break open any wounds, or introduce infection. If nothing else, it'll itch even more as new scabs form!

Now moisturise well. Epaderm is my first choice. I first encountered it when I was at medschool, doing a dermatology placement. It was prescribed for patients with severe eczema, to use instead of soap, and as a moisturiser. In the UK it's available over the counter from pharmacies. This is not a light, readily-absorbed cream. It is thick and slimy; unscented and uncoloured. I know, I'm not really selling it. However, what Epaderm lacks in cosmetic appeal, it makes up for in moisturising power. This is the moisturiser for neglected feet and hands, left overnight under socks or gloves. Or, as in this case, under tubular bandages, padding and layers of fibreglass for a month!

Of course, my arm will still look puny, with wasted muscles and glow-in-the-dark skin, but I've done everything I can to avoid the weeks of itching inside the plaster, and the weeks of flaking skin afterwards!

You'll notice that my kit is made up of things that are natural, uncoloured, and unfragranced. I have numerous allergies, and am very sensitive to chemicals in general. Regardless of that, whatever you put on your skin at this point will be held there, in close contact with the skin, for not just hours or days, but weeks, so choose carefully! Now is not the time to try out a new moisturising cream, or to try to mask that 'plaster cast' smell. Keeping your skin healthy is the best way to combat that!

Only TWELVE more days until my arm is free!

Oh, and the surgeons were very pleased with their handiwork: the scar and the joint fusion underneath. Good news!

About Me

Despite my best efforts, I still spend about 1/3 of my time in hospital (not including outpatient appointments). I have a genetic disorder that affects my joints, my digestive system, my autonomic nervous system (control of blood pressure, heart rate, temperature, and other 'automatic' functions) and hearing. I also have severe asthma. The combination of these things means that I'm almost always exhausted and in pain - this is how I live my life. There is no cure that will restore my quality of life to 'normal', so I have to find quality in what I have. I like things to be organised (makes life easier), love to be surrounded by beautiful things, enjoy knitting, reading and baking. As with all things, however, nothing is perfect, and we all make compromises as we try to make the best of what we have.